[News] Update on UK "live seizure" performance

[Bernard]

I just wanted to clarify my earlier comment.

A motive of "morbid curiosity" was not meant to encompass folks who seek out YouTube videos of seizures in order to gain an undertsanding of what folks are seeing when they themselves have a seizure. That's just a natural and healthy desire for knowledge/education to help deal with personal issues.

I was referring to Joe Q. Public who has no connection to epilepsy and would find the performance interesting for entertainment value.

[Cint]

You got it right!! She is exploiting herself to make money on the shows and maybe is trying to start a reality show.

Remember that family that faked a son inside of a helicopter or something. They were trying to start their own Reality Show. It did not work, both parents are up on charges. They caused the Denver Airport to be closed down. The boy was home in the garage the whole time. they faked the whole thing.

It was a hot air balloon. The family lives in Ft. Collins, Co, just north of Denver. The dad had been on a few reality shows before he pulled this stupid stunt. Good thing the kid finally told what really happened on live television.

The stunts people pull for attention. And who pays?!

[occb]

Just judging by the amount of interest in this thread, I'd say her art piece is going to be very successful in raising awareness -- no press is bad press, as they say.

You may not agree with her methods or message, but it's the nature of artists, especially performance artists, to create provocative pieces. Let's try not to cast aspersions on her character or doubt her mental capacity simply because you don't like how she's decided to express herself creatively. Her body is her own, and what she does with it is her choice, and she's likely aware of the risks.

I thought more about this, and realized that she may inform the public through the performance alone -- if every time she has a seizure an alarm goes off, and if she has simple partials and complex partials and the public is alerted to them through the alarm, she's teaching people to be able to recognize them and understand them for what they are, which is a positive thing.

In fact, the public may leave more knowledgeable, but disappointed, because they may never got the "grand" show they were hoping for. That thought actually makes me chuckle.

[seizingbeauty]

I had read this post the other day and really thought on it. I think that this is one of those times when there is such thing as bad press.
She says she is doing this to increase awareness of an invisable disablity. But by causing herself to have seizures, isn't she undermining the seriousness of effect? Each seizure can possibly cause permanent brain damage or even death. By selling the experiance as art she belittles the sever consequences. They will only focus on the five minutes that she is seizing, knowing that she inflicked this upon herself. The audience doesn't get to see the aftermath, the days of confusion, the insane muscle aches, lost memories and all the other trials we face.
By creating a show out of her condition, causing herself seizures, it presents the world with a vision that the "seizures aren't so bad, I'm willing to have them for money". This is not the attitude the issue should be addressed with.
I fight hard to control my seizures, I have lost alot because of them. She is free to do as she will but I would beg that she does not present this as an awareness piece. There is so much more that we face than just the seizures and this "show" will minimize that which we face each day, and dishonor those who have fought so hard to truly educate the masses as to what we go through.

[Rae1889]

I had read this post the other day and really thought on it. I think that this is one of those times when there is such thing as bad press.
She says she is doing this to increase awareness of an invisable disablity. But by causing herself to have seizures, isn't she undermining the seriousness of effect? Each seizure can possibly cause permanent brain damage or even death. By selling the experiance as art she belittles the sever consequences. They will only focus on the five minutes that she is seizing, knowing that she inflicked this upon herself. The audience doesn't get to see the aftermath, the days of confusion, the insane muscle aches, lost memories and all the other trials we face.
By creating a show out of her condition, causing herself seizures, it presents the world with a vision that the "seizures aren't so bad, I'm willing to have them for money". This is not the attitude the issue should be addressed with.
I fight hard to control my seizures, I have lost alot because of them. She is free to do as she will but I would beg that she does not present this as an awareness piece. There is so much more that we face than just the seizures and this "show" will minimize that which we face each day, and dishonor those who have fought so hard to truly educate the masses as to what we go through.

I just think that the bigger picture is not just about her. Yes she is doing this to herself, She can do what she wants, regardless if it is negative press or not. But it bothers me that there is already a stigma associated with Epilepsy. it is already assumed that we are all the same. We all have screaming, twisting, green barfing grand mals, we are all photosensitive, we are all contagious blah blah blah.

Now its just going to look like we all have seizures for attention and for money, and just because we can. Its going to look like we can control when and where and how we have a seizure.

It will be looked at as everyone does this, and its all a publicity stunt. I swear, if I hear one peep of this from someone to my face that hears about this, who does not have epilepsy. I will be writing this woman a nasty email. This is a form of slander. she is painting us all with the same brush.

[Nakamova]

I don't think the ends justify the means in this case. It's important to raise epilepsy awareness, but creating a freakshow atmosphere around a seizure will have more negative consequences than positive ones. When the artist puts herself up on stage in a performance (as opposed to in a theatre piece), she distances herself from the audience. This allows them to disconnect and recoil -- whereas the best way for people to learn comes when they are able to connect and empathize.

[TempusFugit]

The Arts Council is funded by UK tax payers. I was absolutely appalled when I saw this in the newspaper today and forwarded them the following email:

Dear Sirs,

I have epilepsy and after reading a news report regarding the Arts Council funding £14,000 in the 'name of art' to a woman (Rita Marcola) who is deliberately inducing a seizure, I find this both irresponsible on your part and highly insensitive to people who live (and die) from epilepsy.

I and many others do not consider this art of any kind - merely reinforcing the stigma that we encounter from people who have no idea what it is like to live with this chronic condition.

I am also appalled that encouragement is given to the audience to film this lady having a seizure.

I sincerely hope that this lady does not go into Status (where she could die).

I am spitting nails.

If you also want to voice your concerns, then by all means do so. I did receive a response back but it was pretty non-commital and standard "we will pass your complaint on to the Press Office". That will be the end of that then :S

[Rae1889]

What was that email address? I will be sending soemthing.

[skillefer]

How sad....This is not going to be very helpful to epilepsy. Let's face it, it 's a morbid thing to sell as "entertainment". And what will the audience come away with? Most likely that epilepsy isn't that dangerous and that it's completely controllable in everyone. After all, the artist managed to "make " herself have a seizure..and she was fine afterwards. With people like this trying to "help educate", who needs enemies?

[TempusFugit]

Hey there Rae

I managed to complain at their "Contact Us" page: http://www.artscouncil.org.uk/about-us/contact-us/

Thank you - I have also put the link up on my facebook page (add me if you like ).

*hugs*


Edit: Skillefer - couldn't have said what you posted better than myself.

[Meetz1064]

WHAT IS THIS WOMAN THINKING??? Has she fallen a few marbles short of a full platter??

ANYONE who would want to do this, for art, entertainment or education is truly not all together upstairs. I'm sorry, but speaking on a personal soapbox here, I would NEVER put anyone through watching my seizures, ESPECIALLY MY T/C'S.

I DON'T dispute the need for education, and fund-raising, not at all. BUT.......THIS IS RIDICULOUS. It is truly making a MOCKERY of E, plain and simple. And an arts council willing to pay for this??? They need to have their heads examined as well....

*walking away, shaking head, mumbling*

I have to go now, before I say something I shouldn't......

[TempusFugit]

I had to open up my office window to let all of the blue air that was coming out of my mouth when I read the newspaper article at lunchtime today... I am still seething (which isn't really good I know... :S).

Epilepsy Awareness in the UK is still very poor (in my humble opinion) and as a UK tax payer, I would be much more happier if the allocation of £14,000 (approx $28,000) went towards promoting a positive campaign.

[Chris515]

It is awful that the taxpayers have to pay for this. Unreal.

Thanks for the contact info TempusFugit - I'll be sending something too. Wouldn't it be something if they received so many angry emails that it crashed their server...

This is mockery and is an insult to us all, and making light of what we deal with every day.

This event will not educate the public about epilepsy, it will do quite the opposite.

I'm trying to stay calm... but this makes me so mad......

[Rae1889]

WHAT IS THIS WOMAN THINKING??? Has she fallen a few marbles short of a full platter??

ANYONE who would want to do this, for art, entertainment or education is truly not all together upstairs. I'm sorry, but speaking on a personal soapbox here, I would NEVER put anyone through watching my seizures, ESPECIALLY MY T/C'S.

I DON'T dispute the need for education, and fund-raising, not at all. BUT.......THIS IS RIDICULOUS. It is truly making a MOCKERY of E, plain and simple. And an arts council willing to pay for this??? They need to have their heads examined as well....

*walking away, shaking head, mumbling*

I have to go now, before I say something I shouldn't......

I knew your response would be entertaining. Nakamova's too. so well put!

I am enjoying writing this email!

[TempusFugit]

No problem Chris and pleased to be of some help (perhaps for the very first time here on CWE).

*hugs*



Edit: I really would love to see what you guys write... if only to make me feel better and that mine wasn't the only email that went into their recycle bin today.

[Nakamova]

Hey TF, I followed your excellent lead, and e-mailed the Arts Council with the following:

[It was just brought to my attention that the Arts Council is funding £14,000 in the 'name of art' to a woman (Rita Marcola) who is deliberately inducing a seizure. Is the Arts Council a circus? Does it encourage freak shows? Because that's what this performance will amount to. No matter what the artist's intentions, her show will ultimately:

a. Trivialize and sensationalize the experience of those with epilepsy.

b. Reinforce negative or misleading stereotypes about epilepsy.

c. Endanger the artist and others. There is the risk of serious injury to herself, including status epilepticus (a potentially fatal series of seizures). And those who view her show will leave with misconceptions about the nature of epilepsy that can impact how they interact with people with seizure disorders.

I'm all for freedom of speech -- this woman can express her "art" as she chooses -- but the idea of such a tasteless provocation being publicy-funded strikes me as an imbecilic waste of resources.]

Best,
Nakamova

[TempusFugit]

I really wish this forum had the 'thank you' button enabled... because Nakamova... that response is excellent! Ooo... I feel a little bit better already now

[Nakamova]

No, thank you for taking the initiative to e-mail them! I hope the Council comes to their sense and cancels the performance.

[Bernard]

I really wish this forum had the 'thank you' button enabled...

Ta da!

[TempusFugit]

Woohoo!!!! Thank you Bernard